Help! I am having a flare!

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ashley225

ashley225

Joined
Jun 4, 2011
Messages
17
Hey everyone, I am new to this site and need some help! I am currently having a wicked flare and am looking for any advice possible to make this easier. I was diagnosed last summer (2010) and I am trying to figure out what works best during the hard times. I haven't been able to eat in 2 days and the cramping, bathroom trips, and everything else that goes along with this is exhausting. I had terrible mouth sores that went away just before the flare started, but everything I eat leaves my body instantly. I hope someone has some advice that will help me out. Thanks so much. Love to everyone who is struggling with this disease...it really isn't fun.
 
First make sure you are getting care asap from your GI, before you lose too much of what your body needs to survive, and also try to get ahold of some supplemental drinks, ie ensure boost ect... just to help keep some nutrients in. When ever I flare I eat the BRAT (bananas rice applesauce and toast) diet, it still goes through me fast but bc its soooo bland i tend to tolerate it a bit better. Hope this helps a bit, Shannon.
 
Thanks so much for the advice!!!! I have been sitting by my computer waiting for a reply! My GI just prescribed Flagyl which I have taken before, but it is taking a while to kick in. I have been drinking a lot of coconut water (since it is high in electrolytes) and just started with Ensure this morning...thanks to my mother. Is there anything you can recommend to stop the cramping and stomach pains? I feel like if I eat any food I am more miserable. This is a whole new world to me.
 
Tylenol, and lots of it, its about the only thing we can take for pain, and it does help, I think sometimes I keep them in business. Anything else will accelerate the pain, most pain meds will cause stomach cramping with IBD, so just stick with Tylenol.
 
I am trying to stink with the liquids...but I am exhausted. Are we not supposed to take Advil? How long do these typically last? I feel like my intestines have the dry heaves like the flu. Miserable.

I am pretty sure marijuana is illegal in the US. hahaha! But thanks for the suggestion!
 
Well actually there are I think 17 medical marijuana states many of which support pot for crohns and for where it is illegal u merely get a slap on the wrist it is your private employer policies that one should be concerned with.
 
I will stay away from the advil for sure. Thank you so much for all the helpful tips. I already feel better just knowing I am not totally alone.
 
No no no no advil! Stick with the Tylenol Ashley. Advil will make it worse. I don't know how long it will last. My flare-ups are always the same. I get stomach pain- it escalates over a few hours. I end up crying on the couch for the night. Throwing up and diarrhea are optional. Then, once I fall asleep, it goes away. I wake up without the stomach pains, but feel really weak and tired. I spend the day on the couch recovering, eating saltines and drinking water. Everyone's Crohn's is different. Honestly, I wish I had an idea to make you feel better. But there isn't really one, at least not one that I have found in all of my years of flare-ups. You just have to wait it out. Focus on feeling better. Don't underestimate the power of positive thought. Feel better hun! I'm rooting for ya!
 
Thank you Karissa! I am honestly so sick, I end up on the floor too usually crying also because the pains are so bad. The pains do not really ever subside and are what I would imagine something of what child labor feels like! haha Other than that I can't eat anything at all. My sister snaps on me saying I am doing this to myself which doesn't really help me feel any better. I am trying to understand this disease better myself at 26 and she isn't being the most understanding. So its the flare along with my sister and my parents just trying to get a handle on seeing me not feel well.

Thanks for the positive words. Believe it or not just being able to talk to people on this today is making me feel better. Does anyone know how long we can go without ever having a flare again? And what medications are good. I currently take Lialda.
 
Ha yes my mom always said that when I was in a flare, it looked like I was in labor. I would always be "labor breathing" during the pain. Just ignore your sister. If she was in even a fraction of the pain you are right now, she wouldn't be saying anything. Stress makes it worse. Listen to music, read a book, or watch TV or a movie. Distract yourself. But stay sedentary. Don't push yourself until it passes.
 
There are people who go into remission and never get sick again, Wish I was one of them:), but I have gone into remission for about 5 years straight with barely any symptoms of Crohns, it was amazing. After my last flare about 3 1/2 years ago, I have been on Remicade for the last 2 years and has made a major difference in my life, I fell like I can live again and actually spend time with my husband and children without doubling over in pain or running to the restroom every few moments. I remember my days of huddling on the floor or hunching over the cushions on the couch to make the pain cease, although it never seemed to help, I really feel for you and hope you feel sooo much better really soon.

And for your sister and parents, just remember it is so hard for them to see you go throught this especially for people who are close to you bc they want to make you better and I think concern comes out as anger, mainly bc they are not angry with you, but angry they can't fix you. My husband gets like that still and we have been together 12 years, and when I'm not doing good he gets really angry and tends to be snippy and then says sorry, it just that he gets so agitated that he can't make things better.

Hope this helps a bit. Shannon
 
I think you totally hit the nail on the head Shannon and Karissa. You both definitely made me feel just a little bit stronger. I don't think they really understand, and because it is so new to my life they are trying to grasp it but don't. I am one big crying mess when I am not around them. It is just frustrating to have my sister telling me to eat when I know packing my intestine just makes it a thousand times more painful for hours and days. All part of learning how to cope I guess!

I see a doctor in Chicago, but am looking for other opinions. My mother is really pushing that I just meet with other doctors to confirm I am getting the best treatment. Do you girls both see doctors in your home towns or did you travel to seek other opinions? This is all so new to me, and I just feel like my doctor isn't the most informative. I am seeing him this week in lieu of this flare, but as soon as I am better I am on the doctor hunt!
 
I'm in NJ and see a doctor in Pa, about an hour and half from me because I wanted the best treatment possible. When I was diagnosed at 10, my parents took me to PA to the Childrens Hospital and told me to never ever settle for the closest doctor, if they had to take me 4 hours away to get the best treatment they would have. So I have followed their advice and have done my studying and made sure I fight for myself, you are your best avocate, I think you should try a few doctors out and find the best care possible bc everyone deserves it, I have seen what some (tired of hearing their patients cry about Crohns) horrible GIs have done to people I know, one of my friends almost died before the doctor stopped telling him to wait it out and give the medicine time to work and sent him to the hospital. You have to fight for you and never stop asking questions.
 
ashley225 said:
Thank you Karissa! I am honestly so sick, I end up on the floor too usually crying also because the pains are so bad. The pains do not really ever subside and are what I would imagine something of what child labor feels like! haha Other than that I can't eat anything at all. My sister snaps on me saying I am doing this to myself which doesn't really help me feel any better. I am trying to understand this disease better myself at 26 and she isn't being the most understanding. So its the flare along with my sister and my parents just trying to get a handle on seeing me not feel well.

Thanks for the positive words. Believe it or not just being able to talk to people on this today is making me feel better. Does anyone know how long we can go without ever having a flare again? And what medications are good. I currently take Lialda.
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We are happy to be here to help you. But you might want to mention to your sister that crohns runs in families, and I hope she doesnt get it too. I really do feel you need to get to your Dr or GI as soon as possible. You very likely need pred to get you back under control. Dont let this go on very long or you'll end up like me! Stick to the liquid diet and go to the DR!!!
Wishing you well,
Misty
 
I tried sticking with a GI in my area, but ended up driving the two hours to Boston Children's Hospital. I am more confident in their knowledge and experience with Crohn's. I have been there for both of my hospital stays and my surgery, and I wouldn't go anywhere else. I would look into other doctors. More opinions are always good.
 
The doctor told my sister the chances for her having Crohn's also is very slim. He won't even test her for it. What is Pred? And what does it do? I am seeing my doctor this week. I was prescribed Flagyl.
 
prednisone. And your dr is wrong. Is he even a real GI FFS?? Crohns seems to be inherited. Not always of course! But it tends to run in families!

Drs first thing when in a flare is to give you prednisone to reduce the immune system that is causing your flare. Its a drug that works wonders to help stabilize you. We dont like it, because it causes weight gain in alot of us (not me...i'm lucky) but it does the trick. You NEED something in a hurry to reduce your flare!

Misty
 
it sounds like you're going through a rough time. Sometimes the only thing that helps me is coming on here and reading the supportive comments and other people's stories and experiences. As for pain, most GI's won't prescribe narcotics, but if you can get them, percocet works wonders for the pain and diarrhea. I don't condone the longterm use of these drugs, but any dr that tells you not to take painkillers is a sadist and obviously doesn't know what it's like. I've never been on flagyl, so I don't know much about it at all, but it's my understanding that it's an anti-fungal drug? I know alot of people with crohns are told to take it, but crohn's isnt caused by a fungus. If you are having a legitimate flare, you should be on steroids and immuno-suppresants. I'm not a doctor, so don't jump on me of I'm wrong haha, but that's my take on it. Prednisone is apparently a terrible drug. I haven't been on it yet, but my doctor just instructed me to start it this week, so we'll see. If you want to try a more natural approach to controlling your flare, there are some other things you could try. the BRAT diet, mentioned above, is really good for giving your bowels a bit of a rest and somewhat controlling diarrhea. Rice and bananas "bind" the diarrhea a bit, making it more solid. But if it's really bad, it might do nothing except replenish your potassium and stuff. Which is good, because you lose alot with frequent bowel movements. I would definitely find a good GI to help you out. Mine is pretty good, although a bit dense. He doesn't understand that I have no money for drugs, no coverage because I can't afford it, and I can't work when I'm this sick. So try to find one who understands your situation and what you want to achieve. I hope you start feeling better soon. I hope everyone does.
 
25times said:
As for pain, most GI's won't prescribe narcotics, but if you can get them, percocet works wonders for the pain and diarrhea. I don't condone the longterm use of these drugs, but any dr that tells you not to take painkillers is a sadist and obviously doesn't know what it's like. I've never been on flagyl, so I don't know much about it at all, but it's my understanding that it's an anti-fungal drug? I know alot of people with crohns are told to take it, but crohn's isnt caused by a fungus. If you are having a legitimate flare, you should be on steroids and immuno-suppresants. I'm not a doctor, so don't jump on me of I'm wrong haha, but that's my take on it.
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That was always my take on it as well. I never understood why some people were told to take Flagyl (doesn't it mess with the natural flora in your intestines?). As far as the pain meds go, its perfectly acceptable to use whatever helps you feel better as long as you're trying to find and stop the cause. Its unfortunate that a lot of people with illnesses that cause pain wind up addicted to pain killers because they aren't getting the treatment they need which isn't usually the fault of the patients either. Finding the right doctor for you can take time (my first one that was worth seeing was 4 hours away). Unfortunately a lot of us have to settle with our GI docs because they may be the only one in the area or the only one who accepts our insurance so in this case we have to educate ourselves and PUSH for medications/treatments that we would like to try while we use the ER at our disposal.

Medications that have worked for me in the past for a flare were Prednisone, Asacol, and 6MP. It may take some time to find out what works best for you though since everyone is different.
 
I asked my doctor about Prednisone and he did mention there is a lot of weight gain with that. I am a small girl, so that is worrisome to me. Right now I am still waiting for the Flagyl to kick in. My family had pizza last night and the smell was killing me! All I wanted to do was eat the whole thing. I did pick up Ensure yesterday and have been drinking those to keep my protein up so I at least have something other than water going into my body. I will try the BRAT foods also. What about after the flare? It always seems like it takes weeks to have a full appetite, any suggestions?

Thank you to every one for their advice, kind words and most of all support. I am going to take all of this information and hopefully something will help me out! I am so happy to just have the support. It is so much easier to be on a site like this where people actually understand what we are feeling and experiencing. I hope all of you are feeling well this week. Hopefully some day there will be a cure to all of these terrible diseases!

Also, one last thing...I was told by my GI that Crohn's is most commonly found in people belonging to specific regions and heritage. Has anyone else heard this?
 
He told me this disease is most commonly found in people of Jewish heritage, and the southern Mediterranean areas. I am not Jewish, but I am Italian. So I don't know! I am the only one in my family that has this.
 
Also, one last thing...I was told by my GI that Crohn's is most commonly found in people belonging to specific regions and heritage. Has anyone else heard this?[/QUOTE]

Yes. It runs in families sometimes as I said before. Crohns was originally discovered in the Jewish community. It tends to run in white, western cultures as well. Very rarely found in african, caribbean, or asian countries or families.

Misty
 
There is a genetic aspect to Crohn's Disease. Also, I believe it is not definitely a race thing (although there are such disorders such as sickle cell in Africans), however, I do believe it is more of a disease that plagues industrialized nations. Doctors theorize as to what they believe is causing the auto-immune disease increases in industrialized civilizations, many of which revolve around extreme cleanliness which prevents our bodies from being exposed to common and natural bacterias, use of antibiotics which completely throws your intestinal flora out of whack, hormones/antibiotics and tons of chemicals that pervade our food sources and other natural resources, etc. We are to some degree evolving (in the scientific sense) into a sickly society, we are more focused on managing disease than we are curing disease. My belief is that this will not change anytime soon, and industrialized nations will continue to see an increase in auto-immune diseases like crohn's disease and these nations will see a wider variety of auto-immune diseases crop up. We will continue to co-exist with these sicknesses and our "modern medicines". Sort of like internet security and hackers, Doctors and Disease will be in a constant struggle to 1-up each other where doctors attempt to secure the human body from attacks by new diseases and disorders that evolve from our constant meddling in biology. I think it is all fascinating.

Edit: one other thing I failed to mention is the relationship between stress and aggravating crohn's disease. Mental stress plays a role in your health, and can make your flares worse. In industrialized countries, mental stress is constantly increasing unlike many developing nations where taking time to enjoy life is more the norm than maximizing office productivity.
 
ashley225 said:
I asked my doctor about Prednisone and he did mention there is a lot of weight gain with that. I am a small girl, so that is worrisome to me. What about after the flare? It always seems like it takes weeks to have a full appetite, any suggestions?
Click to expand...

The amount of weight gain depends on the dosage, how long you take it and how much you eat while you're on it. It's not something to worry about when you're in a flare and need to get well. At most its a minor set back if at all because your weight goes back to normal after you stop taking it (mine always did because the only weight I gained was water weight since it makes you retain water but some people eat more while they are on it).

After a flare as in remission? At this point food isn't as much of a factor. Everyone has trigger foods whether they have IBD or not so you learn to avoid certain foods unless you're willing to accept the consequences (such as diarrhea, constipation, gas, bloating, pain etc.). Food does not cause flares. Even if you have symptoms for a couple days that does not mean you're in any sort of flare. So basically while in remission you can eat whatever you can tolerate/want. I've been in remission for over 10 years now.
 

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